4. Be a good listener and when it’s time to say goodbye, say good bye rather than see you later if you’re not coming back that day.

5. Never patronise or ridicule what a person with dementia says because we may forget what you said but we won’t forget how you made us feel. Don’t keep correcting us, otherwise we’ll just go back into to our own world.

6. But never assume that we don’t understand, even when we appear to lose our ability to communicate, we still understand.

7. Don’t keep correcting us, otherwise we’ll just go back into to our own world. Speak clearly and slowly using short sentences and encourage us to try and join in and keep the conversation light and humorous.

8. Remember that you’ll have to listen to the same stories over and over again but don’t say you’ve already said that.

9. Encourage us to join in conversations but please don’t keep saying do you remember…it puts pressure on us. Give us time to respond, it takes us a few seconds more to think things through so don’t put pressure on us, if you’re in a conversation you’re having with the person with dementia and we stop to talk please stop and let us have our say otherwise we may forget.

10. Remember that background noise such as TV radio, people talking or traffic etc makes it very difficult for the person with dementia to understand a conversation. Be prepared for when the dementia takes over, there will be days when we are angry and days where we forget where we are in time. The more that you understand that it’s not the person with dementia that is angry with you, the more you will bear what is to come.

11. Having dementia is like being abroad, you can’t read the signs, people don’t understand you and you can’t understand what they’re saying, try and hang on to every word that the person with dementia is saying and it will help you understand where we are.

12. I like people to treat me truthfully and honestly. And if I’m going to be in a care home, to be treated kindly, obviously, but truthfully and as honestly as they can, while maintaining that kindness. Lying doesn’t help; if you tell people the truth, they’ll come to terms with it eventually.

THE CONVERSATION PROJECT

The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. It’s one of the most important conversations you can have. This Starter Kit can help get thoughts together and then have the conversation. http://theconversationproject.org/starter-kit/intro/

SPECAL (S-P-E-C-A-L) CARE

What is SPECAL dementia care and how can it benefit my loved one? Though this was devised specifically for people with Alzheimer’s disease, it may work well for people with LBD as well.

Specialized Early Care for Alzheimer’s, known as SPECAL, is a unique – and sometimes controversial – method of caring for a person with dementia. The main aim of SPECAL care is to keep someone with dementia feeling calm and contented, even if it means that the carer becomes reliant on therapeutic lying and reminiscence therapy as ways to ensure this happens.

Some carers swear by the SPECAL approach, saying it’s made their loved ones feel happier and more confident, lessened challenging behaviour such as anger and aggression and has even reduced their need for medication.

However others say the SPECAL approach is demeaning to those with dementia, difficult to implement and far too simplistic.

Here’s what you need to know so you can make up your own mind.

Three Golden Rules

The SPECAL approach advises carers to stick to these rules:

Don’t ask direct questions
This includes anything from, ‘what would you like to wear today?’ to ‘what shall I cook for lunch?’
Direct questions are simply too stressful for someone with dementia who may not have enough factual reserves or cognitive ability to answer them. Realizing they don’t ‘know’ the answer can then make them feel upset and anxious.

Instead try giving a simple choice, such as, ‘would you like to wear your red skirt or the blue trousers’ (hold them up so they can see them too). Or ‘Do you fancy chicken or fish for lunch?’ These are far easier questions to answer but should still ensure your loved one has choice and feels respected.

Listen and learn from the person with dementia
Feelings are more important than facts in SPECAL care which places far more emphasis on making the person with dementia feel good even if this means tellingtherapeutic liesor half-truths in response to awkward questions, particularly questions concerning loved ones who’ve passed away. Saying, ‘your mum can’t visit today,’ is far kinder than, ‘your mum died 20 years ago.’

Don’t contradict
If your loved one insists it’s 1964 try to stop yourself from correcting them. The past may feel far more real to them than the present, after all, memories from 1964 are probably easier to recall than those from yesterday. If they wants to ‘live’ in 1964 right now, and it makes them feel happy, why should you try to stop them?

FOR: Those in favor of SPECAL care say:

It places the wellbeing of the person with dementia at the heart of the care – so it is entirelyperson centered.
• It works positively with dementia, rather than trying to ignore or defeat it.
• It can bring a massive improvement in the quality of life of those living with dementia and their families.

AGAINST: Those who have doubts about SPECAL care say:

It takes away choice and control from people with dementia.
• It encourages ‘systematic’ deception.
• It claims to work for ‘everyone’ with dementia, but every person – and every dementia journey – is unique.

In conclusion

Many carers who come across SPECAL find some of its recommendations very helpful, others realize they were already ‘doing some of it’ anyway and feel reassured. Generally speaking, most people gain something positive from knowing about the SPECAL approach.

*Disclaimer* The information on this website and on our Helpline is provided as a resource for LBD caregivers, but it is not intended as an endorsement of any one product or provider, medication or medical procedure, and is not meant as a substitute for any medical or other professional advice.